Breast Cancer Awareness: A Casual Conversation About Mammograms

In fact, this sticker is inaccurate. I got my 3D tomosynthesis-assisted mammogram a week ago. As I am wont to do, I wore my employee ID badge, identifying me as a clinician, to the appointment. Perhaps for that reason, or perhaps because of my breast cancer history, or perhaps because the mammographer called in one of her colleagues to check that she got all the images she needed to, I got to watch the computer monitor as they scrolled through the digital images that had just been taken of my breast-and-a-half. None of us saw anything alarming, but what do we know? Well, as it happens, we know a lot, but the radiologist has the last word. I was pleased that the misshapen lump that is what’s left of my right breast was utterly without density. And the left breast appeared to have only “scattered areas of fibroglandular density.”[1] This is a change from a few previous mammograms, which had shown that my breast-and-a-half was getting denser. Okay, I’m not a radiologist, but I was glad to see that my breast tissue seems to be trending toward less density, after trending toward more. Who knows why, but I do take vitamin D3, which has been associated with decreasing breast cancer risk, possibly by a mechanism which reverses breast tissue density.[2] So perhaps after taking a lot of it these past few years, it’s doing something.

Anyway, bottom line is the thing was negative, according to the damned report I finally got a week later, after hectoring my poor primary care doc, then driving to my local hospital and getting a copy of it, plus a disk with the images, from the nice diagnostic imaging clerk. The nice clerk, after reading my ID badge, which identified me as a clinician, and looking at the computer, which identified me as a person with a breast cancer history, initiated an interesting conversation. I will paraphrase it as follows:

She: You know, these 3D things are pretty good, but why don’t we have a better method for detecting breast cancer than mammograms?
Me: I know! Mammography is so last century.
She: And what about all that radiation? I mean, this woman comes in who’s 70, who’s had all these mammograms, and the current mammogram is negative, and she says, “But I can feel a lump,” and then she gets an ultrasound that finds out she has breast cancer. Come on! After all those mammograms that didn’t find anything? What’s up with that? And you have to wonder if all that radiation caused the damn breast cancer after all those years.

(The jury is still out on this subject, by the way, but here’s a quote from the National Cancer Institute[3]: “Radiation-induced mutations can cause breast cancer, especially if exposure occurs before age 30 years and is at high doses, such as from mantle radiation therapy for Hodgkin’s disease. The breast dose associated with a typical two-view mammogram is approximately 4 mSv and extremely unlikely to cause cancer. One Sv is equivalent to 200 mammograms. Latency is at least 8 years, and the increased risk is lifelong.” But to continue…)

Me: No kidding, huh? Way too many lesions are missed by mammograms, no matter how fancy they are.
She: I think everyone should at least get a breast MRI, say, every five years, no matter what. But then, that would be MORE radiation. It’s nuts.
Me: I know, I know! There are some blood tests being developed, but who knows how long it will be before they are reliable and available.
She: It’s crazy. And that 70-year-old woman? They were ready to send her home after that last mammogram, and she had to insist that she get some follow-up. I had to call the ultrasound person and get them to see her right then. And they said that the cancer had probably been developing for years. Years!
Me: And then we have Pinktober, which is all about corporations selling pink crap and making money, and here we are in 2015, still stuck with outdated detection technology. Not to mention that up to 30% of women who’ve had breast cancer will develop metastatic, stage IV breast cancer. Is 30% of the research on breast cancer going to stage IV? No! And men don’t even know to get screened, and by the time they do, well…
She: I know! We had a man come in, whose sister had breast cancer, and it never occurred to him that he might be at risk, too. And then he found a lump…I told him, if your sister has breast cancer, and you’re her brother, then, you’ve got to get checked.
Me: Yeah, not to mention BRCA genetic mutations. They’re carried by men and women.
She: And why don’t doctors who have patients who smoke cigarettes make sure they get a regular chest X-ray? We have all these women getting mammograms, that don’t work sometimes, and here’s these people who are at risk for lung cancer, and they never get a chest X-ray! Totally crazy.
Me: Yes, it is.
She: Well, here’s your report and your disk. Do you need anything else?
Me: No, I’m all set. Thanks very much.
She: You’re welcome. Nice talking with someone who has a clue, you know? I don’t get to have this kind of conversation very often.

1. ACR BI-RADS® ATLAS — MAMMOGRAPHY. Report with images on interpreting breast density.
2. Cancer Causes Control. 2012 January; 23(1): 1–13. doi:10.1007/s10552-011-9851-3. Vitamin D and mammographic breast density: a systematic review.
3. National Cancer Institute, physician PDQ on breast cancer screening. Scroll to section on ‘Harms’ of mammography.

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Breast Cancer Awareness? Let’s Get Real

It’s only September, and already I’m sick of Pinktober. Already, there’s been ‘sexy’ pink fundraising idiocy, stupid Facebook ‘awareness’ games, and nine pages of newly execrable pink wearables and ceramic tchotchkes on the Bradford Exchange site. Who buys this crap?

There was a #PinkOFF hashtag circulating on Twitter in the past few years. I say, let’s revive it. Because I’m already pinked off.

In an attempt to introduce a note of reality into the whole awareness thing, I’m going to describe some real-life folks with breast cancer. We are not the “A list” people. You know, the people who take up skydiving after treatment, and go on book tours to advertise the inspirational tomes they’ve written about how skydiving gave them back their lives after breast cancer. Frankly, the rest of us are way too exhausted for any of that, nor can we afford the skydiving lessons or the cross-continental plane fares. We don’t feel like warriors or heroes, and we’re ‘survivors’ only in the sense that, so far, we’re still breathing. We don’t walk around decked out in pink ribbon jewelry or pink sweat suits so that we’re easily identifiable. Some of us blog, when we have the energy. But, in the land of happy, pretty-in-pink breast cancer awareness, we’re not represented. We’re the silent majority, as it were. We’re on the “other” list. And trust me — it’s a much longer list.

What we represent is the reality of breast cancer. So, without further ado, here’s a short list of some of us:

  • Seven years after diagnosis and treatment, I’m still tired. Still broke because I haven’t been able to work full-time since. Still have fibrotic scar tissue from surgery and radiation. Still have pain, muscle spasms, restricted motion. Still foggy. Still constantly juggling to pay the bills. But I consider myself fortunate. At least I can work. And so far, I’m still NED — pending my next mammogram in a few weeks.
  • There’s a young woman I’ve known for several years now who, after discovering she was BRCA positive, had a preventative bilateral mastectomy and reconstruction. Swear to god, she developed every post-op complication known to womankind — flap failure, tissue necrosis, blood clots, adhesive capsulitis, infections, you name it. The end results, after several hospitalizations and surgeries, are still uneven and imperfect. She’s still tired. She’s still on a blood thinner. She’s still in pain. But she’s a mom and a wife, and her family are just glad she’s still alive.
  • Then there’s the woman who is an artist, who developed severe peripheral neuropathy in her hands after chemotherapy. Actually, I know a number of folks who fit this description. One of them had to give up making art entirely. One of them, after years of unrelieved pain despite trying an array of meds, finally found something that helps, and manages to work as an artist, although it’s still a struggle. One of them had to stop drawing, because it hurt too much, and took up photography, which hurt less, although she’s too tired to do enough work to make a living, so she scrapes by on disability.
  • Speaking of giving up doing the things you love, there’s my friend who recently had to give up a long, successful, much-loved professional career because of the pain, exhaustion, and complications caused by stage IV breast cancer. It’s hard to have a life when you seem to spend half of it in the hospital and the other half recovering from being in the hospital.
  • Then there’s another artist friend who has stage IV breast cancer. Before she had breast cancer, she was an accomplished, imaginative photographer, had gallery shows, the whole nine yards. Not now. Now, when she’s not having more surgery or radiation or chemotherapy, she still occasionally manages to take some fabulous photos, if she has the time or energy after helping to look after an aging parent, as well as her very young grandchildren.
  • Then there’s the woman who was treated for Hodgkin’s lymphoma in her early twenties. Years after treatment, she developed life-threatening coronary artery blockage due to the extensive radiation she received. She survived two stent placements by angioplasty, only to end up later being diagnosed with breast cancer. Oy. You don’t get a treatment discount for developing a second kind of cancer.
  • Then there’s my friend with stage IV breast cancer who was recently diagnosed with a different, and rare, kind of cancer. If her kidneys are cooperating, she may be getting her first chemo infusion for that second cancer as I type this. Fingers crossed.

I could go on. There’s my friend with metastatic breast cancer whose husband has recurring melanoma. There’s my friend who finished treatment for breast cancer, whose mother was then diagnosed with metastatic breast cancer. There’s my friend whose husband was such a shit while she was being treated for breast cancer, she had to get a divorce. There’s my friend who had breast cancer who later developed Chronic Myeloid Leukemia. None of us are likely to appear on the Today Show or be asked to tell our stories at a Komen fundraiser. But if anyone would like to raise some genuine breast cancer awareness next month, maybe we should. I’m not holding my breath though. And I won’t be wearing pink.

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Mammography and Mortality Study: What Does It All Really Mean?

Like nearly all of us with a breast cancer history, I’ve read (quite a lot, maybe too much) about the now-infamous latest study on mammography and mortality, published July 6, 2015 in JAMA. If you want to slog through the original, it’s at this link: Breast Cancer Screening, Incidence, and Mortality Across US Counties.

Like many of you, I imagine, it makes my brain hurt. In particular, the study appears to have the most disturbing implications for those of us at either end of the breast cancer spectrum, namely, those of us initially diagnosed with DCIS, and those of us initially diagnosed with advanced and metastatic breast cancer. For women like myself, who were diagnosed with and treated for DCIS, we have to wonder if the whole blasted sleighride was pointless and unnecessary. For those whose initial diagnosis was late stage breast cancer and even metastatic breast cancer, we must all feel shock, dismay and extreme frustration that these cancers were not detected earlier. How is that even possible? What the everloving heck??

Earlier this week, I was contacted by a journalist to ask me if I’d be willing to be interviewed about it. She had already reported on the study when it was published, and was looking to talk to a few folks who’ve been diagnosed with breast cancer to discuss our reactions. At first, I wasn’t sure I was up to it. But I decided to agree, after checking out the journalist herself and the magazine for which she writes. That interview was scheduled for today, but it’s been postponed while she and her editor do some further thinking about the direction of the piece. The good thing about agreeing to be interviewed was that it forced me to pull some of my thoughts together. And I decided to share them here. I am frankly not equal to reinterpreting the study directly. But now that I have read the thing, as well as reports on it, a number of issues — old issues, in fact — have been brought to my mind that have been reinforced by my reading, issues I hope do not get lost in the fray.

Non-Invasive Breast Cancer: Overscreened and Overtreated?

Frankly, I’m a little tired of all the flap in recent years about DCIS. When I was diagnosed with DCIS in 2008, I did get pathology reports that interpreted the nuclear grade of my lesions. But the implications of these grades was still fuzzy at the time, and my reports did not all say the same thing. The only thing they stated unambiguously was that none of my lesions were low grade, and that they were somewhat widely scattered. This NEJM study report, published about six months after I was diagnosed, stated that both high nuclear grade lesions and widely scattered lesions were found to be more likely to recur invasively. It also reported that 13% to 24% of women who got stereotactic biopsies of DCIS lesions were found to have invasive cancer in those biopsies. Another study, published after I had surgery and was just finishing radiation, identified new genes in DCIS lesions that were potentially involved in the malignant transformation of DCIS. So, that’s the state of play I and my doctors were dealing with back then.

In the years since, pinpointing which DCIS lesions may turn invasive — and which probably won’t — has been the subject of much research that has yet to achieve certainty. So far, researchers have only been able to determine that some DCIS can and does become invasive if left untreated, and that even if treated, can and does recur in invasive form. But widespread agreement on how to predict its behavior has yet to arrive. A lot has been written about the overtreatment of many, if not most, DCIS lesions, and the trauma attendant to this overtreatment, up to and including women who opt for having bilateral mastectomies. While I would be the first to admit that I would gladly have avoided my entire treatment extravaganza and its aftermath, until we know for certain how to assess DCIS thoroughly and accurately, much of the flap about it, including whether to call it cancer or not, strikes me as premature, if not downright unhelpful. To quote Dr. David Gorski, a surgical oncologist better known to fans of his blog as Orac:

We can overcome the problems of overdiagnosis and overtreatment due to cancer screening. Developing better screening tests will not be sufficient to achieve this end, however. What will be required is the development of predictive tests that tell us which lesions found on mammography or future screening tests are likely to progress within the patient’s lifetime to cause death or serious harm and which are unlikely to do so. Such information would allow us to stratify cancers into those that need to be treated promptly and those that can safely undergo “watchful waiting.” This will not be an easy task. In the meantime, we do the best we can with the data that we have—and its uncertainty.

Couldn’t have said it better myself. In the meantime, could everyone please drop the hype and hyperbole about DCIS? I don’t know about anyone else, but it has not made me feel any better. The long-term damage that I live with since being treated for DCIS was not caused by the fact that the stinking calcifications, whatever their potential for invasive recurrence, are gone and have thankfully stayed gone for seven years. It was caused by the collateral damage and long-term side effects of the treatment that made them gone, and it’s the sort of damage that every cancer patient endures, not just those of us with DCIS. In the meantime, I can happily live without being subjected to further shrill, ill-considered discussion of DCIS. To quote Shakespeare, “it is a tale/Told by an idiot, full of sound and fury,/Signifying nothing.”

And What About That Collateral Damage?

This has been the subject of many, if not most, of my blog posts. We all know what it is. Virtually all of us have some. There is more research these days, but probably not enough research, in my humble opinion, about how to mitigate it after the fact, make it disappear entirely, understand it in the first place, or even how to get oncologists and other physicians to acknowledge that it bloody exists at all. Thank goodness, there is also more research being conducted these days about how to avoid it. Which leads me to my next topic.

Could We Have Better Treatment, Please?

Another blog post. Or six. Better treatment means more targeted therapies; less collateral damage; smarter drugs with fewer side effects; better surgical techniques; better access to clinical trials; better sharing of data; more accurate statistics for all types of breast cancer; better tumor tissue registries; better health insurance and healthcare access; better treatment protocols; improved standards of cancer care; treatment and drugs that do not bankrupt the people they are supposed to be helping; etc., etc., ad infinitum.

Better-Trained Radiologists?

Not unexpectedly, many of the objections to and criticisms of this mammography study, as well as others that have questioned its efficacy, have come from radiologists themselves. However, as many of them would admit, not all radiologists are created equal, nor are they all as well-trained and experienced as they ought to be. It is documented elsewhere (another blog post in the making) that American radiologists do not employ the same criteria for mammographic interpretation as, for instance, their colleagues in Europe. That includes the interpretation and follow-up of findings for dense breast tissue. I have also read articles stating that European radiologists report fewer false positives than their American counterparts, suggesting that they read breast images more accurately in the first place. My own current breast surgeon shakes his head in disgust at the local disparity of competence among clinicians, not only in the interpretation of mammograms, but of MRIs and breast ultrasounds. Come on, people. Don’t we have enough certifying organizations in the U.S. that define competency and provide continuing education to get you all up to speed? Oy.

Better Imaging Tools

Let’s face it: mammograms are so last century. And while there may be criteria for suggesting when to follow up a mammogram with something else — like diagnostic or 3D mammography, MRI or ultrasound — that doesn’t mean that these criteria are consistently followed, or that the imaging is conducted competently, or that these options are even readily available to all. There still continues to be disagreement about the efficacy and accuracy of these tools, along with breast thermography and nuclear imaging. Seriously? This is 2015, and we still don’t have better imaging tools? What’s up with that?

Other Screening & Diagnostic Tools

Lots of research is being done to develop predictive and diagnostic blood tests. Very interesting, very promising. Fingers crossed. Here are some links:

Blood Tests to Detect Breast Cancer & Monitor Response to Treatment

New Test Predicts Breast Cancer Recurrence

Blood Test Could Be More Accurate Than Mammograms

Blood Test Can Predict Breast Cancer Before Occurrence

Blood Test Shows Promise in Breast Cancer Detection

The Really Bad News

For me, the most alarming, unbelievable, disheartening and intolerable implications of the mammography and mortality study are these two: (1) that, apparently, more mammograms did not result in fewer deaths from breast cancer, perhaps because (2) more mammograms did not lead to finding fewer incidences of advanced and metastatic breast cancer, which one might expect if all this stepped-up screening was working as promised.

The first of these conclusions is a thorny subject, rife with a variety of interpretations and disagreements, and must be understood within the context of the study limits and parameters. The study’s researchers have themselves taken some pains to make these clear. So has Dr. Gorski, aka Orac. In the first place, the study subjects were diagnosed in the year 2000, and a lot has changed since then. Also, other similar longitudinal studies of mammography and the reviewers who have interpreted them have come to very different conclusions. However, the tendency of these types of studies in recent years has been to support the conclusion that mammography has not decreased breast cancer deaths, or not enough deaths to justify using it as widely as we have been used to for many years now. The controversial 2009 recommendations published by the U.S. Preventative Services Task Force are themselves undergoing revision, but appear at this point to mirror the mortality study — namely, mammography is still useful, but not as useful as we thought. And it’s really not so useful to women under age 50, usually not even mentioned to women under age 40 unless they have a family history, and that individuals must discuss the whole thing with their doctors, who themselves may not know what to conclude. But, it’s what we’ve got, and we can’t go tossing it out until we have something to replace it. Great.

Where does this leave all of us? Where does it leave women without a family history, who develop metastatic breast cancer in their thirties? Where does it leave minority women, who tend to develop more aggressive forms of breast cancer at a younger age? Up the blasted creek?

It seems to me that we are left almost exactly where I concluded we were left a few years ago: stuck with diagnostic tools that are flawed and inadequate; making the best of treatment that is imperfect, damaging, and too costly in every sense of the word; and very much in need of a far deeper understanding of a complex, still-deadly disease.

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Cancer Brain Drain: My Life Is Still A Mess

Seven Years Later…

It’s nearly seven years to the day that I was diagnosed with breast cancer. I’m still here, still NED, as far as I know, so in that regard, seven is a lucky number. However, I’d rather hoped that by now, I would feel a lot more like my old self again. I think I’ve accepted the fact that I will never feel exactly like my old self again. I just thought I’d feel better than this.

I do feel better. I think. That’s the problem, though. I’m not sure I can tell anymore. My ability to think has changed so much, I’m not sure I can trust my self-analysis. I’ve gotten so used to adjusting (lowering) my expectations for my mental and physical stamina, pretty much on an hourly basis, that I can’t tell for sure if my stamina is really any better than it was, say, two years ago, or if my expectations have declined so much that I don’t remember what normal stamina feels like anymore.

In some ways, I wonder if I’ve gotten worse. I decided to write this post because it bothers me that I haven’t been able to write as many posts as I’d like. It’s not for lack of subject matter. I have about a dozen topics on my prospective-post list, many of them partially researched. But getting myself geared up to sit down and write them? That seems to be harder than it used to be.

The big question is why. I think I know the answer. In an article by Dr. Frances Goodhart, clinical psychologist and author of The Cancer Survivor’s Companion, she suggests that the way to deal with decreased mental and physical stamina is to employ “the “3 Ps” – prioritise, plan and pace yourself.” Believe me, I could write my own book on this subject, if I weren’t still such a train wreck. I’ve been prioritising, planning and pacing myself on an almost constant basis for the past seven years. But my priorities have had to change in the last few years. A lot.

There are four factors that have made my life with cancer’s aftermath more challenging all along, but much moreso recently. In the first place, I’m single. Therefore, I have only one income on which to live — mine. Which leads to the second factor, my demanding, draining, satisfying yet often frustrating job as a homecare physical therapist. I do not have a partner, spouse, butler, personal assistant, trust fund, living parents or anyone else who is contributing to paying the bills or maintaining my existence on a regular basis. And but for a brief, insane few months right after I returned to work when acute treatment was done, I haven’t been able to work full time for over six years now. So, that’s factor number three — living on one fifth less income than I used to. The last factor is that I own a house. It’s a small house, with a small yard, but it still requires upkeep. We won’t even mention the car.

For a long time, I didn’t really have the wherewithal to deal with factor number four in any consistent way. Just crawling to work each day, helping solve other people’s health problems, and then crawling home was about all I could manage. For most of the past six years, I had to take neurostimulants to get through each work day, otherwise I was exhausted by mid-morning. When I got home, I could just about feed the pets and myself, make sure I had something clean to wear to work the next day, and crawl into bed. I’d sleep for ten to twelve hours, then do it all over again the next day. If I hadn’t set up automatic bill payment online, most of my bills would probably not have gotten paid on time. If I weren’t a physical therapist, and therefore spent my work days exercising and walking with my patients, and schlepping through parking lots with my heavy work bag, and climbing stairs in apartment buildings, I probably wouldn’t have gotten much exercise either. On my days off, sometimes I was able to channel my frustration, my need for answers, my outrage at pinksploitation, and my sense of the absurd viscissitudes of breast cancer into blog posts. I felt a lot of frustration and outrage. I wrote a lot of snarky blog posts. Meanwhile, my sweet, innocent, neglected little house looked more and more like a trash pit.

And then I got frustrated with the mess. And my job got harder, because working in healthcare has gotten harder. Ergo, I had to shift my priorities. Ergo, more of my limited energy got spent on shoveling out the trash pit, and on trying to sharpen my ailing mental abilities for my job and my patients. And consequently, I had a lot less energy left over to channel my ongoing outrage about breast cancer and turn it into blog posts. Snark needs pep, and my pep was pooped.

Some of my blog pals have been writing posts this past week describing ’15 Random Things About Myself.’ I’ve enjoyed reading them. Trouble is, it takes most of my effort these days to remember fifteen non-random things about myself. I remember my name and address. I still have to think about my phone number sometimes, because it’s not one of those nifty numeric patterns that makes it easy to recall. I remember how to drive, and with a little planning, how to get to my patients’ homes. Mostly, I remember how to do my job. I’m still learning how to deal with being a homeowner. Last winter’s ungodly record-breaking snowfall here taught me things I never knew about homeownership, the consequences of which I am still tackling. I am constantly worried about money and the personal inadequacy thereof. I also make a concerted effort to remember my friends and all the bat excrement they are dealing with. That’s about all I can handle.

Since the beginning of this year, pursuant to shoveling out the trash pit that is my house, I estimated that I must have shredded or otherwise disposed of about 400 or so cubic feet of old paper records and junk mail. A lot of this was shoved into bags or boxes that occupied every room in my house except the bathroom. It was thus arranged because I haven’t been able to cope with it until this year. Most of it was in the room I use as my art studio. However, I had to get it out of the way because I have to have my home insulation upgraded. And in order for the crew to do this, they have to be able to walk from room to room. With ladders and tools and rolls of insulation. And they have to be able to get into the attic. And I have two attics, one over the main house, and one over the converted garage that is my art studio. Oh, and they also have to get at the foundation sills in the basement. So, this entire project was no mean feat. And that was only one part of it, because it also meant that I had to clean out my drawers and closets to get rid of the clothes that I don’t wear anymore, that were hanging on door hooks or folded up or bagged in various parts of the house, because they didn’t fit into my limited closet space. I’ve made a lot of progress. I’m also not done, but I’m about done enough to arrange for the crew to start. I cannot even begin to describe how much mental and physical exertion this has entailed. I find I can last for about 45 minutes before I have to stop and lie down again. Sometimes, I can manage about three or four of these sessions in a day. Sometimes, I can’t manage any at all.

My hope is that, by the beginning of this winter, I will have a much tidier and better-insulated house, with a lot less stuff in it. Then, maybe I can spend less time dealing with it and more time writing and drawing and channelling snark into this blog. I’ll let you know how it goes. Life is complicated. I need a nap.

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